Autism Watch: 2007

Posts Tagged ‘blog

I toyed with the idea of joining WordPress’s new Post a Day challenge. I came so close, but then realized a couple of key things that changed my mind.

1) I didn’t want to ruin a perfectly good adequate blog with forced posts. In other words, I didn’t want to throw up a post just because I felt committed to the challenge, as there are days that my head just isn’t in the game. Some days, it’s challenge enough just getting everything done that I have to get done, and the non-essentials sit by the wayside. Blogging, as much as I love it, is still a non-essential. While I’d love it to be more important somehow, it’d have to be more important to others than just me, and unless that happens, I can’t bump it up my personal list.

2) Some days, autism takes a back seat. That’s not to say my son is suddenly cured on some days, but just that I don’t think about autism and its profound effect on our lives every single day. Don’t get me wrong, the “a” word is there each and every day in some regard, but there are days that I just want to call “good days.” I want to just be with my son, just be a ‘normal’ mom and go throughout the day without focusing on autism. I want to do the laundry, make dinner, supervise homework, plan the next day’s events, pray, chat, have a glass of wine, hop on my elliptical and ‘be,’ rather than being a mom with a child with autism. In short, autism doesn’t define my life, and there are other aspects of my life that deserve focus. I have other kids, a husband, a job, hobbies, and that’s all I need.

I’ve been told that on my personal Facebook page, I don’t mention enough about autism. Enough? Who determines what enough is? Honestly, I don’t want to see my Facebook newsfeed and see nothing but autism. I’m going to say it once, quietly, and never again: some people seem to thrive on discussing autism and the attention the hardships bring. Don’t take that wrong — well, it’s not entirely nice, I suppose, but sometimes it seems like when the attention over one issue dies down, there’s something else, an ongoing poor me saga that just drains you, and you don’t even see them on a face-to-face basis, ever. There’s unity in sharing hardships and giving/getting support and sharing resources, and that’s a necessity, but I can’t believe that some people don’t have any good in their lives that they can’t share something other than a newspaper article that’s about an abused autistic child, a comment about some wasted research, or how their school gave more money to the gifted children that week than the special ed program or how their husband didn’t spend 467 minutes supervising therapy with the child as they did. When life stinks, we want to vent and get support, but life stinks in more ways than just autism. If I focus just on autism, I miss out on everything else, and the other things that stink don’t get the attention they need. So, for me, “enough” is as often as I want to post about it. If it’s not enough for someone else, there are a lot of blogs or FB friends out there that you can head to for more autism-related news.

I do have another blog, totally unrelated to autism other than a mention here and there in regards to life with my family and things that occur in our lives. In a general sense. I’m not the best blogger there either, only posting a few days a week. I hope to get more devoted to that blog as well, but my little guy deserves more than the back of my head while I’m at the computer.

Happy New Year’s to everyone! (A day late is better than never, right?)

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Recently, a non-internet-user (yes, they still exist!) asked me why I blog. She couldn’t understand why a person would write their personal stories in such a public place for strangers to see. I understood her question, because the way she phrased it was basically the bottom line — my life as it pertains to autism is indeed written out for the world to see. But I’m not sure she understood my response.

To me, writing this blog has been a form of autism awareness. It’s a way to reach out to other parents who may be dealing with similar situations, and to help the world see how profoundly autism can affect a family and a community, even (and pardon the term) “high-functioning autism.”And let’s face, it’s a place to vent at times when there’s no other recourse.

The media so often shows the most severely affected children with autism. So many media pieces are written about the non-verbal and the cognitively affected that there are still people in the general public who are unaware that a child can have autism and speak and not sit rocking in a corner. My blog is a way of sharing that autism can hit anyone, all sexes, all ages, all income levels, all races, anyone. One in 70 boys is now thought to have a form of autism, and 1 in 110 children overall are diagnosed with autism spectrum disorder. Staggering numbers.

When I write, I trust the reader. I assume that people read because they’re interested in autism, and when they read, they remember they’re reading about a sweet, beautiful, extremely intelligent nine-year-old boy with the most gorgeous of eyes, a penchant to hug mom spontaneously and an extreme innocence about the world. Maybe my trust is naive, but I’d like to think that anyone taking the time to read my sometimes very long entries is keeping in mind that they’re reading about a child whose mom loves him like readers love their own children. If someone’s looking for someone to mock, go elsewhere. Don’t believe in my views? That’s fine, that’s your prerogative, but there are debate boards on the internet calling your name. Just like you wouldn’t point at an autistic or otherwise different child in public and laugh at his illness or uncontrollable tics, it’s not okay to do it here.

I’m one of millions of bloggers in the world, people who do so for lots of different reasons. I’m glad my friend asked me why I blog, as it gave me some time to really think about the why and not just the what. I hope to encourage people that autism can improve, and that autistic children are amazing individuals who deserve our love, time, respect and compassion. Autism is just a different way of life, not a bad life. A diagnosis is hard, but they’re still your child and you will rise to the occasion. I wouldn’t ask for an autism diagnosis, but now I’m a better parent than I was before. I’m a more accepting individual and when I hear a crying child in public, I don’t plug my ears and get all haughty about my personal experience being inconvenienced; instead, my instinct is to see if mom needs help and to tell those who are complaining to be quiet and grow some decency. My child is an amazing blessing, and his autism has given this unexplainably unique view on the world that is going to make this world a better place. Autism may be a lifelong condition, but there’s hope and as their primary advocates, we parents owe it to them to never forget that. It’s so uplifting to read the stories on the internet about the strides children and parents are making, and I hope no one ever gives up on sharing it for the masses to read. Together we can show everyone that our kids are worth it.

I guess there’s no other way to put it politely. I’ve been avoiding the blog. I deal with autism all day every day, in some aspect or another, and lately, when I have a spare minute, the last thing I feel like doing is blogging about it. More autism? No thanks, I’ll pass.

But, I think I’m over it. Or at least for now?

The last few weeks…I don’t want to re-live them, but they’ve taken away a lot of faith that people really do love thy neighbor. Maybe I was naive that they ever really did, but I guess I’d been lucky. I’d had good neighbors and aside from the occasional nosey stranger, going out in public was getting easier. But now? I don’t let my son out in the front yard without constant supervision. Out in public, like at the county fair just last Monday, we had to stay on him like glue, after a couple of random unknowns spoke out of turn. (Who knew an empty marshmallow shooter was dangerous to sleeping iguanas?)

But, onwards and upwards. We’ve packed our garage and our china is boxed. House plans are chosen, and tentative house sale dates chosen. It’s not only a reality now, but it’s an agenda that is going to be daily for quite some time now. On a good note, BB is ready for it. He’s ready for a fresh start, new neighbors that won’t talk crap about him because they have nothing better to do. He won’t be blamed for their inability to control their own children. We’ve learned a lot from this experience, and we’re thankful that we can walk away from the garbage. The small-minded ignorant people can’t leave that behind, no matter where they go. We’ll soon have different family to celebrate holidays with, and while we’re going to miss our close friends, BB is going to have 5+ acres to run around on. Animals to chase. Bugs to corral. Gardening to help me with. Healthier food, because we’re going to fish from our pond and eat our homegrown veggies and fruit. Mom and Dad will have less errands, so the stress will decrease and the overall pace will be more enjoyable.

In the meantime, school is doing well. He visits the nurse’s office often — ‘burning fingers,’ ‘sore legs,’ or ‘too hot.’ But the staff sees him for what he is: a sweet little guy who likes to talk and is entertaining but just needs to vent and get things out of his system. Like us, they’ve learned it’s better to give him ten minutes of time or he’ll whine and be unhappy for 30. Ten minutes of attention, even five in a pinch, make all the difference. He starts a new social skills program in a couple of weeks, at school (once a week) and we’re also working on using Rick Lavoie’s recommended approach towards dealing with his behavioral and discipline issues. It was recommended at his weekly therapy and we really like it. The DVD is called “When the Chips are Down.” It’s old (think late-80s-ish?) but the process is timeless.

So, there you have it. More personal viewpoints on daily life with autism and less of the general perspective. We’ll see what tomorrow brings!

I have been MIA. Or as I prefer to call it, MOB: Missing on Blog. No one reason — no tragedies, no health issues, no major events, just constantly busy and in the leftover time, unmotivated to share more of the same old stuff. But, I am back. As I was sitting here thinking how I needed to blog, an opportunity presented itself. Don’t you just love when that happens? A moment where you should be thinking “what do I do?” but instead you think “I can blog about this.”

Barnacle Boy had minimum day today. It’s monsoon season here in SoCal, yet he was running towards me in our whopping mid-40s temps, through puddles, without his coat. But, he didn’t forget the silly glasses my older dd bought him down in San Diego last week. They’re these wire-rimmed round frames with metallic eyes that stare at you. He could be sleeping and you’d not know it, yet he can see out. I wonder if he wore them during class, but right now, I’m quite frankly afraid to ask.

Typical routine when he gets home is he fills me in on his day, has a snack (usually his specially-baked chocolate chip cookies and milk) and then does his homework. If he’s already showing signs of needing to decompress, he takes 20 minutes to play, then comes and does the work then. Today, he decided he wanted to get it done right away. BUT — that wasn’t before he had to rail on and on at me for not buying him a voice-changing toy from the latest Scholastic book order last week. (He got his books back last Friday, after bugging the teachers daily, and just today realized I didn’t order that $9 toy?)

To back-up further — as soon as he grabbed my hand, he started to chastise me for forgetting the toy. I never buy him good stuff. I’m mean. I don’t do cool things. And so on. We finally get to my truck, what feels like miles down the road because it’s freezing cold out and I’m one of only about 12 parents out of 600 who braved getting out of the car….despite there being no rain right then. Anyway, he played the “I’ll put my seatbelt on when I want to, even if you run out of gas while waiting on me” game. (Bear in mind, I drive a large SUV, one to transport our large family and tow our RV. I can’t just park in any small spot, maneuver away from the curb between everyone blocking the road on a dime, or fill that tank for $5. ) I sit there, motor running, while he’s too far in the back to almost hear me, not telling me if he’s buckled in. And cars are whizzing by me to escape the lazy people who were backing up traffic for miles and miles. Then he starts in again on the missing $9 toy. And continues.

We get home. Still on the toy. (Okay, so it’s a two-minute drive. It just felt like longer.) Comes inside, still on the toy. He gets a bagel, eats it, mumbling about the toy. Takes two minutes on Google on his computer to search it out. Toys R Us. Ha, not on my radar the way you’re yelling, Buddy. Comes to do his homework and realizes that one way he’s been doing his homework is not the right way, ironically as he’s doing it again. The pencil goes flying. So does the paper. So do a bunch of non-vulgar words about the homework, the teacher, the school. Sigh. (And that wasn’t my first sigh. In my head, I was putting him on mute.) It’s been 20 minutes now, and he’s finally working on his math. The botched spelling? Put aside so he can ‘talk’ to his teacher tomorrow. (Thankfully, I got him to agree that emailing his feelings to her was not a good idea. Did I mention we have an IEP in two days?)

I had to step away to answer a phone in another room. While there, I see that in his anger, he pulled everything out of his desk drawer and threw it everywhere. As I walk back to where he’s doing his homework, I get the ‘be quiet, do not bother me’ lecture. (He’s 8. Aren’t I supposed to be the one lecturing?) I find another pencil he broke and threw. I suspect it won’t be the last thing I find.

As for the big picture, it’s Nascar season again. Finally. We have race tickets for Auto Club Speedway and Las Vegas. That’s what dh and I do for ‘our time.’ We had our closest friends over for the Bud Shootout this past Saturday, where our driver nearly pulled off a win. SO close. We’re hosting a Daytona party next weekend, same group of friends, a few more, and a whole lot of food. We make sure Barnacle Boy has plenty of things to choose from, but other than when he eats, he’ll be upstairs in his re-done room, complete with TV/Tivo, computer and Gamecube. He can get away from the noise, and we can still have a fun gathering. (We did take ds to the track with us this past weekend when we attempted to use our 3-lap ride-along gift certificates but the rain foiled that. Oh, and to the lady who touched him and told him not to kick his sister? Who are you? Do you randomly touch other peoples’ children? Do you even realize that there might be a whole lot going on that you, a stranger, aren’t privy to? That very act may have set him off so badly we’d have had to leave, and he was doing pretty darn good. Grab him by the shoulders again. I dare you. We really are watching, just as we were then. ) Lots of appointments, doing our taxes, celebrating two more kids’ birthdays…just a busy month, but now I’m back, and ready to bog about anything and everything once again.

And as I type that, ds is yelling at his sister for existing. How dare she come through the kitchen, eat a bowl of cereal that he might want, make it quieter, for Pete’s sake, and stop cracking your knuckles!! I am counting the minutes until dh’s eye-doctor appointment is done so I have back-up. It’s going to be a LONG night.

Oh, and I’ll try not to go MOB again.

When I started this blog back in November 2007, I had no idea how it would work out. Would I blog enough? Would anyone read it? Would I get discouraged and quit? Would my honesty and forthrightness (or my bluntness, if I’m being completely honest) turn people off? Would there be enough to write about?

As the months went by, blogging became easier. Sure, there were a few weeks where I was either too exhausted to share the week or I didn’t want to be a downer. We took a two-week vacation and I got sick a few times. But overall, blogging has become a way of life. In the beginning I had to think about what to write about. Now, I often have fodder waiting at any point, and when things go on, it’s weird how one of the first things I think is “Oooh, I need to blog about this.” How life changes.

The day of my 100th blog post has been an excellent one. Dh had a special project at work, and my 13 yod is camping with the youth group for the weekend. 18 yos worked until 4am, slept a few hours, then left to take his gf down to San Diego for their ‘anniversary.’ (Is 18 mths really an anniversary most people celebrate?) Anyway….my 19 yod slept in, then had to go to work. It all left just me and ds and we had quite the day.

Woke up at 8am, snuggled, enjoying the colder temps that are finally here in the morning, and planned a trip to Starbucks. Starbucks was busy but tables were available, so ds snagged us a table with cushy chairs and waited while I got his “coffee” (chocolate milk in a mini-coffee cup that I almost want to keep, it’s so cute) and doughnut. Mmmm, a nonfat pumpkin spice latte hits the spot on a chilly morning. Came home, did some updates on the PCs (my field, so I’m anal about keeping them all protected, clean and organized) and when the local favorite mini-golf place opened, we headed down to play a couple of rounds. We had a blast! It wasn’t without ds getting frustrated a few times when he couldn’t control the ball. A little talking off the ledge…and a $2.50 bottle of caffeine-free root beer…and we were able to move on. He’s been playing Toontown most of the afternoon, intermixed with spreading out all 100 of his friends (aka stuffed animals) all over the playroom, and I was able to get a lot of little things done, like packing up earrings I made my sisters-in-law, mixing up some new tea, nothing really exciting, just a list full of little things that you have to get done and just can’t squeeze in on other days.

Oh, oh, I almost forgot! I squeezed in some treadmill time and did the fastest 5k time yet! My 19 yod and I decided a couple of weeks ago to join a 5k race next spring or summer, and I’m determined to get my times into at least an acceptable running-time range. I just started running in early-July, and I’m loving it…most of the time.

Dh and I are getting to watch the Lowe’s Motor Speedway Nascar race, mostly uninterrupted (ha, not sure it’s really mostly but I’m being nice…I’ve been called to the playroom to check out more things than I can count) and other than church tomorrow, I am really glad to stay around the house. We made plans for a trip to the Phoenix race in November, and can I just say EXCITED?? Way to go, Jamie McMurray, fifth place!!! (Even if ESPN/ABC won’t interview you post-race, YOU ROCK.)

So my 100th blog entry is a mish-mash of everything and nothing. I guess that’s good though. I’ll take slow now and then. 😉


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